"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." – Khalil Gibran

A.S. Face 0066: Jen Workman

My name is Jen Workman and for as long as I can remember, I have lived with lots of back pain and had struggles to simply move on some occasions, but it wasn’t until this year, in my 40th that I was finally diagnosed with A.S. Many of my earliest symptoms began when I was quite young, I was what many people called a “sickly person”; if I got a cold, it knocked me out, I had chronic ear infections and for the first few years I had to read lips as the infections were just too much to bear and I could hardly hear. Therefore, I was and have been on all variety of antibiotics for step throat infections, mono, more strep infections and was always super allergic to lots of things and was always joked about with friends that I was “that difficult” child who had a bag of meds to carry with me wherever I went.

I have broken bones three times in my left arm, the wrist from skating when I was 8, my upper left arm when I was 10 climbing a tree and then my left thumb when I was on the varsity fencing team for my university. I am certain that many of my A.S complications reared their ugly heads when I was fencing. At first, the pain was tolerable with the workouts, fencing bouts, but eventually became pretty extreme, I was ordered to have some ultrasounds and was told I had patella femural syndrome and to just suck it up more or less. That is when my weight gain began to creeeep into the horizon as the pain in my legs and lower back were horrible.

My twenties were tough because I was beginning my career in teaching, music which I loved and drama too; that required a TONNE of energy always. Rehearsals after and before school sometimes made the classes in between very difficult to tackle. Standing up for any period of time was tough; sitting even worse. But I forged on, convinced that this was just part of getting old..even though I was only in my 20s!! Stress has been huge in my life…and for sure has exacerbated the pain …and contributed to my weight gain, of which..MANY a doctor feels the need to constantly rub in my face and or gently remind me should be “worked on”. When I was 27 I had a premonition about my mother, who was complaining of serious back ache, so I thought to visit her and there I found her, dead from a massive heart attack. I did all that I could to revive her, but knowing that she was dead…and it really took a toll on me. I had to care for my dad for a few years
thereafter…then moved out and back into my own world of busy living. Teaching can be tough, and administrators with a low tolerance for “sickly employees” even tougher and one in particular liked to personally attack people always…her biggest complaint about me was not anyyything to do with my classroom instruction, my classroom management, but with the fact that I use up my sick days…I knew then I had immune system issues, and said as much to her and her lovely suggestion was “well work on that”; again such empathy. This was also the same year my aunt died suddenly of symptoms from her Collitis..I had to help remove the life support, and on my weekends, travel from one part of ontario to the other to clear out her house as she had to sell it ASAP ; she owed the govt. Money and I was her next of kin!! I broke out into a full body stress rash…which of course, was a symptom of my yet diagnosed A.S. It was exhausting!! And I was without
much help to sort her belongings and get her house sold.

Another huge stressor in my life has been the fact that I have an ex who has been stalking me, and threatened to kill me….he is out on probation, been told to leave me alone and I hope he continues to do so….that was April of 2010 that he was told to do this, I finally felt that whooo hoo I would have freedom…but I have to say; it still affects my well being emotionally and physically to know, he may some day seek to harm me. All of this stress brought on the pounds and further complicated my pain management.

Teaching is busy at its’ best and really wears me out….so I would travel to ease the burden. The summer of 2008; I went backpacking, which yes, was EXCRUTIATING!! but immediately after my flight, my legs ballooned to like 4 times their normal size and did not get back to “normal” until 4 hours later, it scared me and worried my travel partners. Made back packing tough; and at 38 all I could think was..”what the HELL am I doing this for?? “ lol. But, I ignored and forged on…figured I just needed to walk it out…..

Fast forward to now…on July 4th, I had a nasty fall, legs just “gave out” as they sometimes do and I got an acute ankle that tore several tendons that was painful to say the least and, I landed on my good/bad leg which I injured from sky diving…so that was painful too!! Well,….after two weeks of being inactive I decided to move, go gardening….and that is when I noticed THEE WORST charlie horse ever. Went to see my doctor and she recommended I see an ortho surgeon. He put me in an air cast then said…that calf is swollen you should see if that is a blood clot. Well, 8 hours in the ER later waiting for an ultra sound, sure enough, that is what was discoverd.

I have been inundated with doctors, a hemotologist that said. “this blood clot is simply because you fell, nothing more (even though I had a positive lupus anitcoagulant reading) and that you will just have to wait it out and let it dissolve..oh; and lose weight….instead of eating two hamburgers just have one”. I was PISSED that he was so dismissive. I have been off work now for over two months because the pain in the clot is so bad and there is still a chance that it can travel. I kept asking my GP..” can I have an arthritis assessment now that I have time off, as I am SURE there is something there”. She kept saying..”you have a vein issue, be patient”. And I KNEW that was not the case and she refused the first request. THEN I had an ultrasound done and sure enough; clot was still there…THEN she says..”what would you like to do.” I then request the assessement….FINALLY I see a Rheumatologist who , upon seeing me for 14 minutes
decides that I have just bursistis, that I need to stretch, and lose weight….but “oh lose the blood clot first.”. Finally, after drawing 34 vials of blood….I tested positive for A.S.Just LAST WEEK. I have been doing laser therapy and accupuncture for the ankle and back, massage for the back ache and phsyio therapy to work on healing AND I am seeing a naturopath for weight loss…..but this has been sooo depressing.

I feel vindicated that finally have a diagnosis, but it is upsetting that I was constantly being treated like one walking symptom, a walking poster-child-for-weight-loss…and merely not someone with a disease. I am happy to have a diagnosis, and yet….feel so overwhelmed with all of the info; but I am grateful for support networks. I am concerned about the blood clot not going away, and maybe having to be on disability at 55% of my salary, I feel lost without my job, so much of who I was is wrapped in my career; I feel depressed that I am overweight and constantly being judged by the medical profession because of it….and worry for my future. But, I am gonna fight the good fight and do what I can to learn how to cope….learn HOW to be PATIENT with myself which is the HARDEST thing to do ever….and learn as much as I can to improve my health and well being. I am just so amazed at how long …many people have endured…before they are finally
diagnosed!

Longing for patience and working on healing are my challenges ….let’s see how this goes!!

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7 Responses to “A.S. Face 0066: Jen Workman”

Jen..
You are very courageous and I really feel for you and all you have gone through in your life.
What caught my attention is your blood clot as I an lying in the hospital as I write this note to you. I was diagnosed Saturday with a ovarian vein thrombus..a blood clot on the ovary vein…extremely rare. I also have AS and now wondering if there could be any correlation with our disease and blood clots. I see my Rheum Dr next week..he is so smart and I know he will have some answers for me. I am in blood thinners now are you? I pray for wonder days for you ahead and like we all have to do…keep our chins up and push through.
Blessings,
Julie : )

Hi Jen – yes I was interested in the blood clot part as well. I have had issues with “suspected clots” in my lung during a recent bout of pluerisy and am now on my way to hospital for a MRI on my brain. The referral letter says that they are looking for tumours and blood clots – go figure! I am also wondering if there is a link to A.S with this!!

Thanks all for comments…going to investigate the blood clot connection. There is a GREAT book out there I just read about auto immune diseases too…it is called “Autoimmune Epidemic” not sure of author; but is a startling look at statistics and likelihood of having more than one auto immune disease when finally diagnosed with first. Will see what my rheumy has to say about blood clot connection in a few days when I have next appt. Be well all….